More than paperless: have we lost sight of the true goal of shared data?
By Jon Reed, Chief Digital Officer at Future Perfect (Healthcare)
For the past few years, there has been a big drive within the NHS to ‘go paperless’ as a way of becoming interoperable and achieving a first-rate digital delivery of care. To me, that seems to be the wrong priority. Or rather, the health and care systems have lost sight of the real problem we’re trying to solve. Paper alone was never the problem.
When you want to reach a state of shared data and you start with the very simplistic idea of being paperless, it results in exactly what has happened. Different organisations dashed to scan their paper records, and ended up with, well, electronic paper. It still isn’t highly accessible. You can’t process it. You scroll through hundred-page PDFs to access the right information. It’s difficult to keep up to date. That’s the problem, and ‘paperless’ is the wrong answer to the question of how health and care becomes truly interoperable with easily shareable data. What you need to do is put the patient back at the centre of things, and make that your guiding light.
We need to consider: what information do we need at the right time, in the right place, so we can make decisions that will result in effective care? Ultimately, at the end of this goal, we will likely be paperless. That shouldn’t be the priority, however. The priority is to improve patient care, and a by-product of reaching that goal will be the digital capability that allows for the free movement of data.
Patient-centric care is the goal
The true goal of shared data, to me, is that patient-centric way of thinking. The only way you can treat a patient effectively and safely is if you have all their information in the right place, structured in the right way.
Clinicians need the information that’s necessary for the patient in front of them, and who is anyone to say what the clinician won’t need at the point of care? You might insist that they don’t need to see the patient’s social care or mental health record, but that might be relevant. It’s key to have easy access to all of it, because that will result in a full view of the patient and excellent care irrespective of what data is where.
Are we on the right path to a system of shared data?
We are on ‘a’ path, there’s no doubt about it. But it isn’t the most efficient path.
This existing habit of using large, monolithic systems to manage vast quantities of data in many different silos is not helping the case for shared care. It could even be a massive distraction. It sucks in huge amounts of funding and diverts the organisation’s attention towards it for years at the same time. It’s a longer, more costly way of reaching the healthcare system’s interoperable goals.
So, what can be done? Having a better blueprint now would enable health and care to get to an interoperable state faster and cheaper. It might not tick every box for every organisation, but the patient is the priority above all. There must also be the right leadership at the centre of that blueprint which would combine a set of mandatory standards with a common infrastructure. A lack of leadership will slow things down, and the wrong leadership could have a similarly negative impact.
Historically, NHS Digital - and its previous names over the years - has had initiatives in this area, to develop standards for this, and some great work has been started. But two things have happened: the first is that this work was never completed, and the second is that there has never been the leadership to enforce it. NHSX was the new hope, but whether it has lived up to expectations is the question, after a relatively slow start due to different pressures placed upon it, from political to the pressure of big suppliers and lobby groups.
The NHSX Digital Academy is helping to educate CIOs on the ‘art of the possible’, and all CIOs should aim to attend it. We need to tackle legacy ways of thinking and create a solid standard to aim for. Once an industry standard is reached, external supplier support becomes possible, and that is exactly what’s needed. I think we’re getting there steadily - we all know that data silos are not helpful to clinicians or patients. That’s why at Future Perfect, we’ve been working on Panacea, a suite of solutions that can illuminate the entire patient pathway, with all of their data flowing unhindered.
In addition to that kind of leadership and knowledge, we need a shift in the way we procure systems, and what standards there are for the systems that are bought. Suppliers should have to conform to a standard of being interoperable as a requirement. And this should be on a national scale.
Data without borders
The NHS, in England in particular, is quite a big and unwieldy thing. It’s quite difficult to manage the system as a whole. The more ICSs you have, the more borders you have between them, and there will always be care providers and patients that straddle those borders (such as regional or super-regional hub-and-spoke specialist services). Individual ICSs can’t address that. True openness and interoperability can, and will. Borders should become irrelevant, with free movement of data across them.
Supporting shared care and interoperability is going to take time - aiming for being paperless is only a tiny proportion of what’s needed, and as I said above, it shouldn’t be seen as the single solution to the challenge we face. It should be a by-product of a massively improved way of working. The true goal of shared data should always be enhanced care for the patient as an individual with a life that spans many different services and places of care.